Ty Hafan

family stories - Rhys

callum's story

My name is Amie and my son, Callum, goes to  Tŷ Hafan. He loves it and so does the whole family.


Callum is nearly three and has Ohtahara syndrome – a rare epilepsy condition.

He was born by C Section on 18 May 2012. He was ok at first but when he was five weeks old, he started fitting. He was having at least 19 fits a day and he was hospitalised for nearly four months.

He had an MRI scan, a lumbar puncture, blood tests and genetic testing and it took almost a year before he was diagnosed with Ohtahara syndrome. Callum has since been diagnosed with cerebral palsy and scoliosis – curvature of the spine.

He can't walk, talk or even smile. The last smile I had from him was when he was six weeks old.

callum

Despite this, Callum is such a pleasant little boy who we love to bits. We wouldn’t change him for the world.

Tŷ Hafan has been my rock. They help us as a family and make us feel so welcome when we visit.

When the nurses look after Callum, it gives us time to spend with our daughter, Kelcea. They have helped us so much and we can’t thank them enough.

When the nurses look after Callum, it gives us time to spend with our daughter, Kelcea. They have helped us so much and we can’t thank them enough.

family stories - callum

Tŷ Hafan takes its support to wherever it is needed: at home,  at school or in hospital. We do this completely free of charge  for families in Wales that need us. Please help us continue to be there for life-limited children and their families, so they can make the most of the precious time they have left together. 

Download a PDF copy of Callum's Story here

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